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Updated: May 13, 2026
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Genetic Analysis of Hereditary Transthyretin Ala97Ser Related Amyloidosis
Published on: June 9, 2018
Systemic amyloidosis in England: an epidemiological study.
Jennifer H Pinney1, Colette J Smith, Jessi B Taube
1Department of Medicine, UK National Amyloidosis Centre, Royal Free and University College Medical School, London, UK.
British Journal of Haematology
|March 14, 2013
Summary
The incidence of systemic amyloidosis in England is estimated to be at least 0.8 per 100,000 people. This rare disease, particularly systemic AL amyloidosis, most commonly affects individuals aged 60-79.
Area of Science:
- Epidemiology
- Public Health
- Rare Diseases
Background:
- Epidemiological data on systemic amyloidosis in England are limited.
- The National Amyloidosis Centre (NAC) was established in 1999 to provide a national clinical service.
- Estimating the disease burden in England has not been previously undertaken.
Observation:
- Data from the NAC database were compared with English death certificate data (2000-2008).
- Amyloidosis was recorded on 2543 death certificates, representing 0.58/1000 deaths.
- Of 1143 NAC-followed patients who died, 79% had amyloidosis recorded on their death certificates.
Findings:
- The minimum estimated incidence of systemic amyloidosis in England in 2008 was 0.4 per 100,000 population.
- Incidence peaked in the 60-79 age group.
- Systemic AL amyloidosis was the most common type, with a minimum incidence of 0.3 per 100,000 population.
Implications:
- The study suggests the incidence of systemic amyloidosis in England exceeds 0.8 per 100,000 population.
- These findings highlight the need for increased awareness and diagnostic efforts for systemic amyloidosis.
- Further research is warranted to fully understand the epidemiology and impact of this rare disease.
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